Physical Health United Kingdom Project #23589

Sponsor a Family Support Worker for Sick Children

by Rainbow Trust Children's Charity

Project Report | Oct 28, 2016
Monica provides a lifeline for families

By Jenny-Anne Dexter | Project Leader

Marvellous Monica!

“I’m Monica, a Family Support Worker in the Durham team, I have worked for Rainbow Trust for 12 years! When I’m not at work I enjoy spending time with my 22 year old daughter and my little dog, Rolo. I also like days out with friends, shopping and maybe the odd glass of wine.”

Monica provides a lifeline for families in the North East of England who have a child with a life threatening or terminal illness. Monica, works with around 15 families at any one time, and her job can involve anything from going to hospital appointments, caring for siblings or helping out with everyday jobs like shopping and school runs.

"I've worked in childcare for health and social services, so when I saw an advert for the Rainbow Trust I was really interested. It just sounded so rewarding."

Her first placement was with a young boy from Consett, who was battling cancer and sadly died six months later. "It was totally new to me going to the hospital and learning about the different types of cancer and medications. I worked with this family throughout the boy's treatment and accompanied her to appointments. She was so nervous she would come out and ask: ‘What did that mean?' and I would help explain things to her."

Monica is one of six Rainbow Trust family support workers in the North East, who provide care for families throughout their child's treatment: "We ask what parts of life they are struggling with the most – it could be things like getting the kids to school or taking them out for nice visits. It's keeping families' lives as normal as possible and giving them a good quality of life. If the child gets better we work with them for around a year afterwards, if it's a bereaved family we work with them as long as they need us."

Despite watching families struggle, and the heartache of losing some children, Monica says, "I loved the job straight away. It's a real privilege to be welcomed into a family at such a time – every day is different and doing even small things can make a massive difference to them."

Rainbow Trust has nine teams of Family Support Workers around the country from Southampton to County Durham supporting the whole family. Last year we supported 2,000 families, with support from donors like you. Thank you!

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Sep 7, 2016
What our parents say about Family Support Workers

By Jenny-Anne Dexter | Project Leader

Emily with mum and Family Support Worker, Sarah

Your donations have made wonderful things possible. Here are some of the things our parents have said about our Family Support Workers:

“We wanted to thank you so much for all the help and support you have given to Amelia over the past years. As you know Amelia has been through some very tough and unhappy times and we have all been so grateful for all of your support and advice, you have always been there to help us all when we have needed it, even having a cup of tea and a chat has helped us. You have been brilliant, always happy and cheerful, you brighten our day when you visit.”
Mum of 14-year-old Amelia

“Marlene was someone who could step in for a short space of time and take some of the strain from my shoulders. We laughed so much with Marlene, with her around something was always funny! Her visits gave me both a physical and emotional break from looking after Ruby – I had someone to talk to who knew us, knew the illness, knew our situation and who wouldn’t get upset if I offloaded onto her. I could tell Marlene things that I just couldn’t say to anyone else.”
Amanda, mum of six-year-old Ruby

“Sarah’s help gave me that breathing space that I hadn’t had since Emily was diagnosed. I trust her with Emily, my precious child. When I am home with her, I ask her every 20 minutes, are you OK? Sarah’s help gives us both space and normality. I didn’t think this kind of practical help would make a difference but it really does. It’s made life more bearable which I didn’t think was possible.”
Katie, mum of 10-year-old Emily

“Dawn came to Jack’s funeral and sat next to Liam in case he needed to leave the service. She has been with us ever since. It’s over a year since Jack died and Dawn has been invaluable. Other charities leave after the child dies but Dawn never left – the hurt will never go away so having Dawn stay with us has been so special to us.”
Maria, mum of Jack and Liam

Thank you from all of us at Rainbow Trust Children’s Charity for helping us to make so much happiness.

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Jun 7, 2016
Me and My Family Support Worker

By Erika | Rainbow Trust Beneficiary

Amelia and I

My name is Erika, I'm 17 years old and I'm currently in hospital. I suffer from a disease called Idiopathic Pulmonary Arterial Hypertension. I've had it since the age of 13 and I wish I didn't.

It is a chronic and life changing heart and lung condition. My heart works less effectively than yours. Just walking is a task for me, I walk at a slow pace and have to stop often to catch my breath. I also suffer from breathlessness, dizziness, feeling faint, chest pain and tiredness.

I am supported by Rainbow Trust Children’s Charity, they help me and my family cope with my illness.

You can help Rainbow Trust fund more Family Support Workers so that young people like me have someone to talk to about their hopes and fears, while they cope with having a life threatening or terminal illness.

My Rainbow Trust Family Support Worker, Amelia, is absolutely incredible.

When you’re chucked into a situation that you weren’t expecting, you feel totally alone. I don't take to new people very well but Amelia is just amazing and we just click.

Amelia’s not a friend, she's not family. She cares, but in a different way, so you're not afraid to tell her how you're feeling. When you speak with family and friends, you're worried. You're scared because you don't want them to be sad, or be reminded that you are ill. All you want is to have a nice day, so you don't really want to talk about it.

I'm able to enjoy myself more because I have Amelia to talk to. We laugh 90% of the time, we smile a lot, and we talk often, and that's the best way to be. She can't take my disease away, but she can be there for the bad days, to make everything easier and a lot more enjoyable.

Without Amelia, I'm not really sure where I'd be.

I'm so glad I could write to you to help raise awareness, because without people supporting Rainbow Trust, I have no Amelia, and without her I have no support. Mum agrees that it’s exactly the support we need right now, though in the future we may need more help, and I know that Rainbow Trust will still be there when I need Amelia more.

I worry about the families that don’t have a Family Support Worker like Amelia. There are still thousands of families just like mine that need one right now. By donating to Rainbow Trust, you can give ‘an Amelia’ to more people who need them.

Erika

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